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Essential Thrombocytosis symptoms

Blood Cancers & Disorders | Last Active: 5 hours ago | Replies (115)

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@rhollis

Hi @1pearl I am also in the US in VA, currently receiving treatment from a specialist at Massey Cancer Center.

I was initially treated at a regional cancer center where blood work confirmed a CALR mutation. The Dr assumed due to elevated platelets I had ET
and I was treated for quite some time with hydroxurea, although ultimately it did not keep my platelets down the way the Dr hoped, so he took me off of it due to side effects.

At this time I sought a second opinion at Massey, and a bone marrow biopsy was recommended. This is apparently the only way to determine whether the issue is ET, Polycythemia Vera or Myelofibrosis. They have to analyze the bone marrow.

It was determined from the bone marrow biopsy that I have MF.

Based on my experience, I would recommend that you see a specialist to confirm your diagnosis.

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Just as an addendum, my platelets have consistently been over a million and did not respond to hydrea. I also have had low red blood cells and at times, slightly elevated white blood cells.

Thank you for your reply.
I would like to receive a second opinion; however, I have Kaiser and I would only get another doc in their system who I doubt would challenge the diagnosis I got from the doc I have. I forgot to ask her how many patients she has treated like me for ET. I did have to inform her that Keytruda was recommended for triple negative breast cancer my sister had and she was my sister’s oncologist. She get get it approved and added to her treatment along with other chemo infusions. That was over three years ago and my sister has no evidence of disease now and is in remission but she is always fearful of recurrence. I just changed to Kaiser recently when I became 65 as I had no diagnosis on my right ring finger joint enlargement using my husband’s work insurance he paid quite a bit monthly for me to have. I though maybe I would get an answer since it has a large pool of docs. Instead, I got no answer on it and a diagnosis I of ET and hypertension too! I am just very concerned and confused at this point.